I was new yesterday but didn't tell the whole story because it is very emotional for me to even think about it. My husband had a flashback to Vietnam while in the hallway at the middle school where he had been a teacher for 19 years. That was 4 years ago. He didn't hurt anyone. They called me at work and I told them to take him on to a psych inpatient hospital. They kept him 2 weeks and then the VA hospital took over and kept him another 2 weeks. I retired that year so he wouldn't have to be depressed and in the hospital any more. That didn't help, he has been in a psych ward 7 times, the last time about a month ago. It has been very hard, embarrassing and scary, so I mostly don't tell about his PTSD. I don't want people to be afraid of him or shun him. I'm glad this place is here so I can tell it. Maybe there are other LOs out there with PTSD so I am not alone any more.
I understand how scary it is to have a LO with PTSD. My husband also has/had? PTSD from his time in Vietnam. The difference with him is that before he was diagnosed with FTD he had horrible nightmares--wake up screaming--and would never talk about his experiences. He was also very easily startled by loud noises--hated the fourth of July. Now he no longer has the nightmares and talks very easily about his experiences. I don't know if that is due to the illness.
Have you tried to file for VA benefits for his PTSD? We tried but were turned down has they couldn't find his records that he was in combat. His Army job numbers show him as a company clerk although when he got to Vietnam they already had one and sent him out to the field for 6 months...he may not remember what he did yesterday but he sure does remember the VA telling him that he couldn't prove he was in combat.
I understand about people acting differently around someone with PTSD. When people find out that they served in Vietnam and have PTSD, they seem to think they are all mentally ill. These guys didn't get the help they needed when they came home.
Post traumatic stress disorder can come from other things as well. My DH was in WW2, and he was blinded in combat. His eyesight eventually came back, but he was left with eye disease. He ultimately had 2 corneal transplants, the first was one of the first, in 1957. During the surgery, and afterwards, he had to lay on his back with sandbags around him for 6 weeks. this has caused the kind of thing you're talking about with nightmares, and not being able to lay on his back for any kind of medical tests (MRI, CAT, PET etc) He also has claustrophopia and can'b be restrained in any way. Now with the AD also, it's been getting more intense. My thoughts and prayers are with you both
I think my husband may have a mild form of PTSD ... at least, he had the screaming nightmares at times, and I've learned the hard way not to be close to him when I try to wake him up. The very first time, he was lying with his back to me. When I touched his shoulder, he leaped in the air, flipping over in mid-air (he had to defy the laws of gravity to do that), and slammed his hand down in a karate chop less than an inch from my nose. It's a good thing he missed... He rarely talked about the dreams, other than a brief explanation of why he attacked me like that, and almost nothing about what happened over there. Like Deb's husband, mine doesn't seem to have the dreams so much since he developed AD, but unlike hers, he's still not talking. Like Chris', he has claustrophobia -- can't tolerate small spaces, or people crowding him. One time, we were in a museum with an exhibit that supposedly simulated being in a submarine -- it was much more roomy (I've been in subs) but dark, with portholes that appeared to show an underwater environment. I was fascinated until I realized he was about to freak out. I had to drag him out the emergency exit. Haven't really had the opportunity to notice much difference in the claustrophobia since the AD started, since I learned long ago to avoid situations that would bother him.
I shudder to think of all the young people whose lives have been saved in the last six years, but who will now be home with PTSD and dreadful disabilities.
FayeBay, I also think our LOs with 70% or more disability get nursing home care but I've heard it is only in the VA facility. They also offer home health care for the vet with 70% disability or more. My LO has 70% so I'm hoping it is the case. I went to a nursing home in our town and they told me the VA doesn't pay any more, we would have to be private pay. That was going to be $3400/month. Wow. I guess if my LO needs nursing home care he will have to be in the VA facility and I don't know about the quality of that. I'll go check out the VA facility when I get the chance, I obviously can't take him with me, and I don't get to go places without him very often. It is a hour and a half drive to the nearest VA facility. It wouldn't be good to have him that far away so I'm hoping he will be alright with just home health. The good news today is that my LO also doesn't remember the Vietnam experiences any more. Tho he does have the nightmares still.
Danise, I do not about the overall VA nursing homes but my Dad spent his last few months in a VA Alzhiemers unit in Lake City Fl. It was top notch and all the staff were too. If you want to get an idea of how a unit operates and if they are good to their patients, go at meal time and observe how they interact with the patients as they feed them. It is a real eye opener!!!!!!!!!!!! My father was first admitted to the skilled nursing unit (hosp) and I caught an orderly using menthol shaving cream to clean his bottom after a bowel movement. The orderly said that it killed the smell, well my Dad had a terrible rash and was red and raw!!!!!! I threw the shaving cream can against the wall and went to the administrator. The staff had no idea that the orderly was not using the wipes provided to him. Shortly after that they found a bed for my Dad in the unit and he died there. He was very happy there and we were able to visit him anytime and take him out for walks, etc.
Several web sites about financial aid for veterans or surviving spouses:
http://www.veteranaid.org/
http://veteranaid.org/experience.php
http://www.vetassist.org/index.htm
http://vabenefits.vba.va.gov/vonapp/main.asp
http://veteranaid.org/forums/index.php?board=2.0 (This is a discussion forum for people who have questions about getting aid for vets)
To quote from one site regarding the Aid and Attendance (A&A) benefit: "This most important benefit is overlooked by many families with Veterans or surviving spouses who need additional monies to help care for ailing parents or loved ones. This is a "pension benefit" and is not dependent upon service-related injuries for compensation. Most Veterans who are in need of assistance qualify for this pension. Aid and Attendance can help pay for care in the home, nursing home or assisted living facility. A Veteran is eligible for up to $1,519 per month, while a surviving spouse is eligible for up to $976 per month. A couple is eligible for up to $1,801 per month."
I've seen people recommend asking the local VA office and/or the local chapter of the American Legion for help in applying for A&A -- it will go much more quickly and easily.
One person recently posted on "the other site":
Please go to the web page myhealthyvet.com and click on your state most of your questions will be answered there. There are also links to call the VA hospitals to talk with an advisor. If all above fails look in the yellow pages for The Purple Heart Society in your area and call them. I am a vet and have had much luck with both.
One of my wife's doctor's thought she might had PTSD after having experienced the events of 9-11 first hand. She never talks about it and doesn't want to ever watch anything on TV that has to do with 9-11. When she has talked about it, she gets VERY emotional and the tears flow like a waterfall. She says she can still "smell" it!
We talked to her 3rd neurologist about it and he didn't think she had PTSD. I thought I read that Trauma can be one of the triggers that can cause AD. Or is that just wrong?
I am still thinking that she should have some talk therapy about it, but she seems unwilling. guy
The director of my husband's adult day care called me to his office to tell me he thought DH's AD was caused by PTSD from Korea. DH had talked to him all about his combat experience. Problem was, DH was in Korea but never in combat. He was stationed behind the lines and altho he was in an air raid or two, never, never in combat. As some of you know, the stories they tell can be so 'real' that people believe them. Anyway, the director never believed me--but then we also know that the CG is often not believed. I knew others in his unit, and he was never in combat.
Guy, stress certainly exacerbates AD symptoms, and there is evidence that stress can speed the progression of the disease. Some researchers believe that prolonged, severe stress can trigger AD, but this has not yet been studied sufficiently to confirm the hypothesis. The link between stress and AD is a very hot area of study these days. A few links on the subject:
Sunshyne, I totally agree with you about the long-term, prolonged stress. I have the impression that my DH has been bothered by possibly three things. 1) Beginning at a very young age stress. surgeries at age 15 months and age 4, appendix surgery at age 7, many family deaths (a cousin in Vietnam, auto accidents, and his mother did not handle any of it well, he saw her have panic attacks from these things.) 2) a flu-like illness may be 10 years ago. (Lime disease has been ruled out twice, he has had achy joint problems since.) 3) A tumor on his pitulatory gland, the prolactin part. (The doctor has told us that hormone problems can cause all kinds of problems, his thyroid is checked twice a year and no problem there) All of these things or may be only one of them could have started his FTD like problems. He is someone who has had a volatile personality all of his life but I have noticed more problems since the illness. Mary!!
You know, Mary, that infection may have been what did it. There's a lot of evidence tying various types of infection -- some bacterial, some viral, including Lyme disease -- with AD.
that's how you spell Lyme. I knew it was wrong but couldn't figure it out. I really think it was Lyme. He had a tick and everything about the same two weeks or so. But he was tested twice a couple of years apart and nothing showed up. This was a man who never missed a day of work in his life and he missed a whole week and was on the couch the entire time with flu like symptoms. This was within a month of the tick. Since then, he has had the joint pain and swelling. Not fibromyalga, not arthrites, his doctor can't figure it out. Then, last fall at his appointment, I mentioned to the doctor about him being hot and cold, and his eyes glassing over sometimes, and the joint pain, and the tiredness for no apparent reason and the doctor looked me in the eye and told me not to look for problems when there weren't any. His blood work was fine, hormones levels were fine (with meds he is taking), so the doctor said this. DH still doesn't think anything is wrong other than the tumor and the joint pain, so at least for a while or a year may be, no more testing.
Thanks for the links Sunshyne. I know that whenever she is stressed out she is worse. I am learning to not stress her, and am attempting to calm her down when she is. I've learned not to say "calm down"!! :>)
Not easy, but love and patience is the only way. guy
I popped over here from the discussion on sleep problems on Sunshyne's recommendation. My DH was diagnosed with PTSD about 15 years ago. He did not serve in the military but lived through a physically and emotionally abusive childhood that culminated in his mother's suicide on Christmas Eve (a really awful childhood). This didn't play out in nightmares or troubled sleep though (it played out in anxiety while awake) until the last couple years when the AD was also starting to become obvious. Then we had additional trauma in our life with our daughter being diagnosed with cancer and my husband losing his job (and career) in a very traumatic way, and suddenly his decline into AD sped up. I have for months been saying to family members and Drs. "I think stress has been a big factor in my DH's EOAD" and they all look at me like I am a wing-nut. No one I have talked to has been as informed as Sunshyne on the possible connection between stress/PTSD/AD. I am printing out the link articles for family members. When my DH is really agitated at night and flailing around I waffle between going in the other bedroom to get some sleep for myself and wanting to stay with him and try to comfort him and keep him from falling (falling is the wrong word, it is more like flinging) out of bed. Guy, you are so right about not saying "calm down". I try to just talk quietly and say things like "it is a nice quiet evening and I am here with you in our warm cozy house". Danise I appreciate you telling your emotional story because I know how hard it is, my husband's job loss was a similar event and it was very public and difficult for all of us.
Fritz, it is so strange that so many people aren't aware of the links between AD and stress ... my husband's first (now ex-) neuro also thought I was a wing-nut. (I like that.) But when you think about it ... stress is well known to cause pseudo-dementia (that is, to cause dementia symptoms, but they can be reversed if the stress is treated.) So if stress can CAUSE the symptoms in a healthy person, why on earth wouldn't you expect it to make the symptoms worse in an AD patient?
Much later down the road, I had to petition the courts for conservatorship of my husband. In the form that his doctor had to fill out (I used his PCP, a very nice man who is much better suited to care for AD patients than the ex-neuro), they even had a question about whether stress affects his symptoms. Sheesh. If the relationship is so well-established that the COURTS know this, why on earth don't all the doctors???
Anyway, it was so obvious that stress was very bad for my husband that I started digging into the AD research center at a local university, to see if I could find someone who could help me help him deal with stress. One of the PhDs there is involved in research on whether prolonged stress triggers the onset of AD, lovely lady, she was very helpful in getting us in touch with the right people for a clinical trial. At first, I thought I might be able to enroll him in a study for which she was trying to get funding. Unfortunately, I gather she had to revise her grant application, to study the effect of stress on patients diagnosed with MCI. My husband was well into full-blown AD by then.